Living In Defiance Of Early-Onset Parkinson's Disease

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Night Fears and Morning Hopes

It’s 3:30 AM, and it’s taken me almost an hour to write this first sentence. It’s partly because the going-to-bed meds have worn off, and the getting-out-of bed meds are still sitting on the counter. But it’s also because I have multiple voices whispering in my ear, saying things like, “tough it out – don’t whine,” “if you can’t say something nice, don’t say anything at all,” “don’t curse the darkness, light a candle instead,” and other bits of wisdom that sound much better at 3:30 PM than they do at 3:30 AM.

I’ve had enough experience with 3:30 AM over the years to realize that everything looks worse than it really is from here. Fears and anxieties take on a sinister nature that isn’t there during the light of day, shadows are darker, and joy and comfort seem remote. Eventually the sun rises, but at 3:30 AM, I sometimes question even that simple truth.

At 3:30 AM, I wonder how I’m going to get through the next 10 minutes, not to mention the next 10 years. I worry about what people really see when they look at me, and I suspect that there are conversations going on about my deterioration that I’m not aware of, and will never again participate in. At 3:30 AM, I mourn the things I’ve lost, and I wonder what’s next. I grieve for relationships that have changed, degraded, and disappeared, and I dread turning into a burden instead of a partner and source of strength. I feel betrayed at 3:30 AM; by God, fate, my own body, the institutions I mistakenly trust to do the right things. At 3:30 AM, I feel ashamed of my own weakness, and I feel like a hypocrite for working to project a hopeful, positive attitude during the day.

At 3:30 AM, uplifting, inspiring thoughts escape me. I generally think in literary allusions and quotes from favorite books and movies (it’s easier than having an original thought), but at 3:30 AM, they’re dark in tone.

“Things fall apart, the center does not hold….”,

“I’m not afraid…” “You will be….you will be.”

“This is the way the world ends.. not with a bang, but a whimper.”

“Life is a tale told by an idiot…full of sound and fury, signifying nothing.”

But, 3:30 AM passes, as it has every single day for the last 51+ years of my life. My thoughts begin to ease, the shadows break up, and as the meds take hold, my body begins to work again. I remember that, up to this point, I’ve got a 100% success rate of living through the day, so the odds for the coming day look pretty good. (For the probabilistically literate among you – I know they’re independent events. Don’t bother me with details; I’m on a roll.) The nature of my internal dialogue changes when 3:30 AM passes, and I remember that there’s reason to hope and be optimistic, and that it’s not wasted effort. I realize that the fears and anxieties of 3:30 AM are real, but they are not the sum of my existence. My literary allusions change:

“That which does not kill us makes us stronger.”

“And now these three remain: faith, hope, and love. But the greatest of these is love.”

“Oft hope is born when all is forlorn.”

As usual, 3:30 AM finally slips away, and the day starts again. No telling what it will bring, but it’s kind of like pizza – even when it’s bad, it’s good.

And then, there’s the dog…

I have a dog. She’s new to us, having only adopted us about a month ago. Her name is Isobel, but if you call her that, she thinks she’s in trouble. She prefers Izzy, but will answer to Iz, Dizzy, Skizzy, poodlebutt, and Your Royal Highness. She is a standard poodle, and she’s seven years old, so she has some sympathy for my slowness and clumsiness in the morning, and we have to convince each other that going for our customary morning walk is better than just hanging out in the den and eating dog biscuits (they’re actually not bad, and full of healthy goodness, she tells me).

She’s working on settling in to her new home. She has some skepticism that strangers can be trusted (and everyone else is a stranger at this point), but I am in the midst of an experience that’s new to me – the unconditional love and acceptance of a canine companion. She’s fallen in love with me, and the feeling is mutual. My wife doesn’t mind, and Izzy no longer growls at her when she comes into the room, so there’s no need for them to duke it out (my wife would win – shorter teeth, but more resolve and experience).

Izzy was a breeding female on a ranch in Montana, and had seldom been off the ranch, had almost never been exposed to strangers, and had never been alone in her entire 7 years. She was a mid-pack member of a large group of standards, and had a constant poodle companion (Buddy) and a loving and supportive owner who wanted to let her retire and, as she put it, “spend the rest of her life in comfort as a couch queen.” It took about 2 months and some almost dog-like sniffing to ensure we were poodle-worthy and not axe murderers or exclusively cat-lovers, but we finally were able to conclude the negotiations and have her flown to Texas.

The trip out from Montana was intended to be simple and stress free, but what is? She got on a plane in Missoula, Montana after having driven for 2 hours from the ranch (she didn’t actually do the driving, but you get the drift), and left for Minneapolis at 6 AM. Remember, this is the girl who had no experience with airplanes, strangers, being confined, being alone, or being anyplace that didn’t have an unrestricted view of the biggest sky on the planet. She was not pleased. To make matters worse, she had a flight delay in Minneapolis (as all seasoned travelers must, at some point), and finally arrived in San Antonio more than 14 hours after leaving the Montana ranch where she had spent her entire life. She spent this time in a shipping crate that she had seen for the first time about a week prior to her flight.

When I first saw her, I was horrified at what she must have been through. She was covered in everything that can possibly come out of a dog (the airline couldn’t, or didn’t want to, let her out of her crate for the entire 14 hours) and she was filthy. Worse, she was frightened into immobility. Not aggressive, not skittish, just glassy-eyed and overwhelmed.

I think it irritated the airline freight handlers who wanted to go home, but I opened the crate door and just sat with her, offering her a treat occasionally to see if she would come out of the crate. It took nearly 30 minutes, but she finally took the treat from my hand and ate it. She took a short drink of water, and then did something I’ll never forget – she crept a little way out of the crate to where I was sitting on the concrete floor of the cargo facility, put her head in my lap, and heaved a big sigh, as if to say, “OK, if you’re what I get, I’m good with that. Let’s get out of here, please.” I don’t know about her, but that’s when I fell in love.

I don’t often find that PD symptoms are an advantage, but I think my lack of a sense of smell was probably a benefit on the drive home. She was as dignified as anyone could be when covered head to toe in excrement and other foulness, and it didn’t bother me when she put her head in my lap again. (For public health reasons, I did hose the car out later). My wife and I gave her a bath when we arrived home, and then tried to go to bed. She was still freaked out, and didn’t know what to do with herself. I could almost see her thinking, “Where’s my kennel? Where’s Buddy? Where’s Deb? You don’t really want me to spend the night HERE, do you?”

We were inseparable over the next week – as luck would have it, my wife was out of town at a research conference, so Iz and I were together constantly the entire time. I think that’s why the imprinting/bonding is so strong (for me; can’t vouch for her). The bond keeps getting stronger – she politely puts up with other people, but she is my dog and I’m her human. The Dog Whisperer would scold me, but when she comes and puts her head in my lap and looks at me with doggy adoration, I can’t help but to get down on the floor with her for a hug. She even puts up with me using her as a handhold when I have to get off the floor again.

Some people treat dogs as tools or objects – like a socket set or a tractor, you take care of it, but you certainly don’t love it. Some people, on the other hand, dote on their dogs to the extent that they turn them into tyrants. I hope to avoid both extremes – Izzy is my friend and companion, and she relies on me. I need that sometimes, and I think she’s smart enough to know it.

3:30 AM is well past. Izzy is up now (she loves me, but getting out of bed at 3:30 AM? Please.). It’s time to either go for a walk or have a biscuit and bark at the squirrels. I’m going to try a new experience this morning (a new type of target shooting match), and we’ll see how well that works. The day may be a good one, or it may be one of those days that I have to struggle through. Even the bad days are good, though – we only have a limited number of them, and wasting one is an offense. Every day is a new opportunity to shake off the 3:30 AM fear and anxiety; I will rejoice and be glad in it. I hope you will, too.

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8 thoughts on “Night Fears and Morning Hopes”

Tracey Black

Always look forward to your next blog, but especially loved this one. Animals are very special, and standards are wonderful companions! Glad you found each other…seems like it was meant to be! I don’t know what it’s like to live with a disease like you have, but have and older sister with MS, who’s future is always unknown. I admire you both for living your lives the way you do! (They are building a home just outside of San Antonio…look forward to getting down there when its complete! much nicer area than Houston!) You probably don’t even remember me from high school…so long ago! But in any case, I will continue to look forward to hearing your life story. Thanks so much for sharing!

Corey, I feel ministered to and encouraged every time I read The Crooked Path. First, thank you for putting the time and effort into composing this. I know on some level this is laborious.
Thoughts. My version of the saying, “That which doesn’t kill us… will probably kill someone else.”
Regarding Iz, when I was growing up my dogs, first Brownie, then her last pup, Beauregard, were my personal therapists. They seemed so pleased to hear what I had to say, listened to every problem and believed in me enthusiastically. There is truth to the thought, “There is a friend that sticks closer than a brother.” (Yeah, it’s my dog.) I’m so glad you’ve got Iz and that she has you; a match made in San Antonio.
And as you know, I serve people who daily experience your third paragraph. I can only say that I believe God is accomplishing important things in the lives of many through you (and through my patients) that would otherwise not be possible. Love you, my brother.

I too was up at 3:30 am…anxious about today’s travels. It’s SuperWalk weekend in BC and we have a 3 hour drive to the nearest community large enough to host an event. There is no Izzy in our lives. Even poodles trigger my husband’s asthma but I knew a lovely standard named Annabel. She ruled the roost at my friends’ house, teaching many generations of labradoodles their manners. My left hand is still cranky, waiting for the meds to kick so I will have to be brief as there is lots to do before leaving and I hate the constant correcting.
I just wanted to say thank you for this piece. I love it.
Leslie